People suffering from the syndrome, also known as myalgic encephalomyelitis, have been treated as malingerers and met with disbelief, according to Northwestern University law professor Steven Lubet. Many have been referred to psychiatrists.

But the debilitating effects of the illness are real, Lubet writes in cross posts at Legal Ethics Forum and the Faculty Lounge. Lubet has been coping with the syndrome since late 2006.

“I am often essentially immobile, with other debilitating symptoms as well,” Lubet writes. “On days when no one sees or hears from me, it is most likely because I am housebound or bedbound. Sometimes it is impossible to manage the keyboard.”

Lubet says he has had fewer negative reactions to his condition than other sufferers, and that he has also benefited from excellent medical care. “If anything, I have been relatively lucky,” he writes. “I cannot travel, exercise, attend evening events, walk more than a hundred yards, or concentrate for long periods of time—but I have otherwise been able to lead a productive and relatively normal, if limited, life. ME/CFS sufferers with less support and fewer resources have found themselves unemployed, impoverished, and abandoned.”

Lubet says he “outed” himself to broaden public understanding.

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Very brave and positive move on his part. I applaud his courage and hope others in positions of power come forward about their experiences with the illness.

It's interesting that ME/CFS patients are put in a situation where they have to 'out' themselves, for fear of stigma etc.
I think a large proportion of the blame for this must go to the psychiatric lobby, but also the media, and the medical profession and governments.

It would be nicer if there was more detail on how it affected his everyday life (despite his acknowledged 'privileged' position) and also if this sort of story appeared in more mainstream publications. Having said that a professional journal isn't a bad place for this sort of story to appear. If his legal peers get it that isn't such a bad thing.

It's interesting that ME/CFS patients are put in a situation where they have to 'out' themselves, for fear of stigma etc.
I think a large proportion of the blame for this must go to the psychiatric lobby, but also the media, and the medical profession and governments.

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I agree. I think there needs to be a normalization process, where people stop seeing it as a negative thing to be ashamed off. It is difficult though, when the comments you get back are so negative when you do tell someone you have it. I think being more open about it though could be quite benefical to us all. Perhaps we should organize a mass 'outing' together.

It's interesting that ME/CFS patients are put in a situation where they have to 'out' themselves, for fear of stigma etc. I think a large proportion of the blame for this must go to the psychiatric lobby, but also the media, and the medical profession and governments.

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Yes, and ironic when we are told that we cling to a ME/CFS diagnosis to avoid the stigma of mental illness.

Thank you @Antares in NYC This article was a good find. I keep thinking that a young and hungry lawyer (and there are lots of them!) will see an opportunity to profit from the government's discrimination against us.

It's interesting that ME/CFS patients are put in a situation where they have to 'out' themselves, for fear of stigma etc.
I think a large proportion of the blame for this must go to the psychiatric lobby, but also the media, and the medical profession and governments.

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To this list add long standing societal pressure to ostracize and blame anyone different for any reason. Sacred be the norm. It must annoy some of them that they cannot manage to have 2.4 children.

It must annoy some of them that they cannot manage to have 2.4 children.

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Disgust at the idea of having 2.4 children who grow up to hate their parents, a house in the suburbs that is never paid off, and being an invisible cog in a mega-corporation before being condemned to poverty in old age are the main reasons I have refused to live a conventional life.

I did manage to avoid the children, the house in the 'burbs, and a corporate career. The poverty, not so much.

August 29, 2016An Appalling Episode in ME/CFS Research
Some readers will recall my earlier posts about the serious flaws in the PACE trial, in which a group of British psychiatrists purported to show the ME/CFS was best treated through Cognitive Behavior Therapy and exercise (thus implying that the illness is psychological rather than biomedical)....... In the latest episode, which is now approaching cover-up proportions, The Lancet, which published the original study, has refused even to publish a critical letter that was submitted by 43 highly credentialed U.S. researchers, physicians, and scientists.